Your Questions... Answered!

Kevin from South Africa asks: "Amanda, when was your first seizure and were you scared?"

Great question, Kevin! Glad to see I have so many readers in South Africa by the way! My first seizure happened when I was in the 7th grade. I was on the way to a basketball game with my best friend at the time when all of the sudden the whole world started to spin.
Sounds started to repeat in my head, and everything was literally a blur. About half an hour passed and I woke up on my front porch getting dragged in the door by my parents, who at the time thought I must have been on illegal drugs. My friend's father expected the same thing from what I can guess, and literally just left me there like a piece of trash. At that time I didn't even know what seizures were, but all of my seizures have started the same from there on after.

Rachel L. asks on Facebook: "Is being called "High Functioning" insulting?"

I was a little confused at first, but after a little conversation with Rachel I started to understand what she meant. Often in my life people have questioned me on my illness and how it affects my daily life. When you have Epilepsy, you aren't always in bed. Some days you function just like a "normal" person without illnesses, and other days you are stuck in bed and cannot do anything at all.

My mother often pulled the line "If you can have a job, see your boyfriend, and talk on the phone, you should be healthy enough to clean your room". Managers would say "If you're so sick then why do you have a job? You look healthy to me!".

Both prove decent and true points, but when it comes to Epilepsy - or any illness for that matter - it's not always a full-time sickness. Sure, sometimes I can stay out all day and all night with my friends, but the next day may be like hell if my seizures have had a flare up. Yes, for a while I had a job, but I planned my job so that I worked at certain times of day when my seizures weren't so prominent and frequent.

If someone is questioning your illness by saying that you are "high functioning," therefore implying that you fake your illness, then that is definitely insulting. This has happened to me all my life, even before I knew I had Epilepsy.

Alex M. asks via E-Mail: "Mandy, what is it like running a blog site, Facebook page, Twitter, online clothing shop, etc? It must be hard at times! I can't imagine keeping up with all that and taking care of yourself... not to mention your illness! God bless you and all that you do! I'm rooting for you!"

Awesome question! The truth is, doing all of this isn't exactly easy. First of all, I'm doing it all out of my own pocket. I don't ask for donations, I don't borrow money from my parents, and I am currently out of work. I rely on babysitting jobs and allowance for the costs that come up.

Then there is the Epilepsy - That is a whole other story. I know the times of day when my seizures are at their peak, but I never know when a grand mal is going to strike. I have to be very careful, get adequate rest, and make sure that I'm not overworking myself. There are times, as many of my fans have noticed, when I simply say "Sorry guys, no blog this week". Even hard-working gals like me need a personal vacation for their health.

I plan out my days so that I can make a little time for each thing. Facebook always comes first since it is easiest and can be managed quickly. I reply to all my comments, questions, messages, etc. Then I head over to Twitter to update the rest of my fans on what's happening on Blogger and Facebook. My EpilepsyBlogger clothing store doesn't need to be updated too often, so that is more of a once-a-week thing. Blogger comes last, and I often blog in the evenings when I have more quiet and relaxing time to myself.

Jeremy C. asks via Facebook: "EpilepsyBlogger, are you planning to get on YouTube and make videos any time soon? I've heard you mention it a few times on Twitter and My Life as Mandy... With Epilepsy."

Actually, Jeremy, I am planning on getting on YouTube! I am waiting until I become of high demand, so I have casted voting via Facebook for my viewers and fans. When I get enough votes to prove to me that I am needed on YouTube, my account will be created! If you are interested in voting, please click here: http://www.facebook.com/home.php?sk=question&id=225827390784679&qa_ref=qd

Lesley H. from Jackson, Michigan asks via E-mail "Hello Mandy! I was curious on what you do to lessen your seizures? Do you take any special precautions, eat special foods, or do anything different that changes your seizure activity?"

Thanks for the awesome question Lesley. There are some things that I do to lessen my seizure activity, and they have actually worked quite well for me. Although these things do not work for all people, they can reduce seizures for many.

• First would be Yoga therapy. It doesn't seem like much, but as my recent blog mentioned, relaxation greatly reduces seizures. As a matter of fact, a very recent study has shown that meditation has been able to actually change the structure of the brain and level electrical activity. Click here to view the article from Medical News Today
• Secondly, I make sure to avoid foods that increase seizure activity. I mostly try to avoid soy and caffiene - Soy has been one of the biggest culprits for me, and caffiene is one of the worst things out there for people with Epilepsy. You have to experiment and see which foods are worst for you. Click here to learn how to avoid food-triggered seizures.
• Another important thing is to limit electronic usage, and when using electronics, use them correctly. Using electronics for long periods of time can cause seizures. The flickering of TV screens, computer monitors, video games, etc. can induce a seizure alone - but if you continue use for a long period of time, it can be worse. You should also always make sure that a room is lit while you use electronics, as this lessens your eyes from having to focus from dark to light. Click here to learn more about electronic usage and seizures.
• Lastly, SLEEP. This is one of the hardest things for me, as a person with Epilepsy, to keep under control - but I have to. I'm on a lot of meds, and in many of my blogs I have mentioned how my insomnia just comes and goes. Getting the right amount of sleep (9 hours) is vital for a person with Epilepsy. AED's or Epilepsy Medications often make this very hard. Some doctors prescribe sleeping pills - which in my opionion are not necessary - but I prefer to take Melatonin. Melatonin is a natural hormone supplement that can be found at any drug store or vitamin store, such as GNC. Melatonin is a hormone that makes you fall asleep, and is given off naturally by your body when it gets dark outside; Essentially, making you sleepy and ready for bed. To help the Melatonin work better, you should always try to get at least a half an hour to an hour of sunlight a day. Believe it or not, your body has its own clock that is controlled by the darkness of night and the light of the sun. When you have lack of sleep, your body gets stressed and can lead to major seizure activity.

Rick L. from Denver, Colorado asks via E-Mail "Sometimes I jerk in my sleep, and my wife is always telling me that I make a horrible moaning and groaning sound as well. She said my mouth is wide open as this happens, and I look awfully stiff. I can personally remember some of it - more or less the tail end of each episode. I feel fine once I wake up... So is this a seizure? I have Grand Mal seizures, but they have been under control. I've never had any other type of seizure that I'm aware of I don't really go in for doctors appointments anymore since I'm under control. What do you think?"

I am not a doctor, but I do have seizures that are called "Awakening Grand Mal" seizures. Many people who have the regular "Grand Mal" seizures get these. I suggest consulting your doctor, and setting up an appointment as soon as possible to make sure that nothing serious is wrong. There are types of sleep apnea that may be the cause of the "moaning and groaning" and the mouth wide open could be due to trouble breathing. A sleep test should probably get done, and your doctor can set that up for you. Meanwhile, here is a wonderful link for you from Epilepsy.com called Sleep and Epilepsy: FAQ. My sleep seizures are a lot like yours, except I actually clench my jaw. It happens almost every night, but it comes and goes from month to month. If yours is consistent, it can be dangerous. Many people who have seizures die in their sleep from suffocation. Try to sleep on your back so you can breathe, and do not sleep with a mouth guard or anything of that sort to get rid of the risk for choking. Good luck and I hope it is nothing serious!

Emilia Hernandez from New York asks via E-Mail: "Hello Mandy, I am so pleased to see all the work you have been doing to promote Epilepsy Awareness on Facebook, Twitter, Blogger, etc. I do have one question for you, though. What made you want to start all of this? Is there a specific reason you want to promote awareness, or did you simply start your charities because you suffer from Epilepsy? Anyway, God bless you and all that you do now and in the future. You are so awesome! Rock on!"

I am honored to know that you think I'm so awesome! Thank you for the best wishes, Emilia. I actually started my EpilepsyBlogger account on Facebook after seeing all of the terribly ill children with Epilepsy at my local doctor's office. I was so heartbroken that children under the age of 5 have a harder life than I do, and I want to be a part of changing that. No child, no teenager, and no adult should ever have to suffer from seizures. It's a terrible thing to deal with, and there's no way to butter up the term "Epilepsy," although many try to do so. My blog itself was started to share my journey with my VNS device that was implanted last May, but it turned into much more. I have expanded quite a lot, and I hope to expand even more in the future if I can. I want to put a stop to Epilepsy before the day I die, or at least have a part in it all!

Anonymous asks via E-Mail: "How old were you when your seizures first started? By the way, awesome blog!"

I am actually still a little blurry about this. I remember having some small ones as a child constantly, but I never knew what they were. They weren't too serious, and most involved metallic tastes in my mouth or disruptions of the senses and vision. My first Grand Mal happened at age 14-15, but we were sill oblivious to what Epilepsy was at that time. I was diagnosed at age 16, and I have been fighting this illness ever since! I don't plan to give up just yet, either!

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I want to thank everyone for all the questions! There are still many more, but this blog was getting a little long. I will continue the rest next week, and I am continuing to take questions as they come via E-Mail, Twitter, Facebook, and from Blogger. So feel free to ask any questions you may have and tune in to see them answered right here on Blogger!

God bless you all,
EpilepsyBlogger
Mandy Krzywonski

Please send your questions to:

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